Archive | September, 2017


27 Sep

One particularly hot summer day with the sun spreading its warmth (well, radiating ninety degree sun rays straight from the sky) we headed…to the circus museum.  While I love the history and examining the antique box cars from the traveling days, my favorite part (and my girls’ favorite parts) are the animals.  We happened to arrive just before the tiger show, which is by far our favorite.

My middle daughter was tucked in our jogging stroller she’s outgrown, the canopy up creating her own little bubble where she can watch but feel secure.  If we go anywhere we have to use a stroller.  She can walk.  She can run too, but she can also tire out quickly.  We don’t know if it’s her low muscle tone or if it’s back pain from scoliosis or if she just wants the security of being in the stroller.  We just know if it’s not there unless it’s a short walk we will have a meltdown without it.  She will stop and refuse to move.  At seventy-plus pounds and over four feet tall I can no longer balance her on my hip like a toddler.  The times I do pick her up out of necessity my back pays for it for a few days.

So back to us being tucked in our stroller and me pushing her quickly to try to make the tiger show before it started.  The trainer was seating the beautiful creatures and everyone is looking for seats on the bleacher seats.  Most seats were taken already as we’d had a slower start than we like (the night before had been rough).  But I spotted seats in the front corner.  We sit on an edge where it is easy for me to remove her from a place if it becomes too much for her.  When things are new, when things are loud, when things are overly stimulating, it can go well, or it can become too much for her.  So we try to sit near an exit just in case we need to leave.

And I never know when, so we just prepare for it.  

She sat on the bench in the corner like we always do.  She smiled and giggled and was already glued to watching giant cats sitting just like our geriatric cat does at home.  I know she loves watching animals and with the multiple fences between us and these beautiful, but large animals she feels safe.  I tucked the stroller next to us and walked over her to sit next to her.  We happened to be sitting on the handicapped seats.  I noticed that as an afterthought, but I did not think anything of it.  While Nyssa is legitimately cognitively disabled, I consider her physically disabled at times because of the inability to walk far:  we have a doctor’s note that gave us a state handicapped tag and I never feel bad using it with her.  It took me a long time and many years of trying to manage without it until I swallowed my own PRIDE and asked for it.  Our pediatrician didn’t blink.  I don’t like to play the disability card often, but I will when it is needed.

The entire row of the benches next to us which were not labeled as handicapped, but not by an exit were empty.  There were also available front row and second row seats in different sets of bleachers. A gentleman was assisting people just coming in to find seats.  With barely a glance to my daughter he asked me to move, asking “if we could make an available spot for those that need it.”  I shifted down the seat at first, trying to ask my daughter to move with me.  She wouldn’t.  She didn’t want to.  This was her spot, this is where she was comfortable and she wanted to stay there.

She is more stubborn than I am and that is saying a lot.  If she doesn’t want to do something-good luck.

When he insisted and continued to usher elderly people to their seats (please note nearly this entire first row of seats is STILL empty).  I smiled stiffly while my mother-in-law informed the man “she IS handicapped” as he asked one more time for us to move over to make room for others.  I had to pick my daughter up a bit to get her to shift over a seat with me.  A woman sat in the seat that my daughter had just been sitting in a few minutes ago.

I regret that I didn’t stand up more for us.  But I was still speechless.  I do not think this man was intentionally mean.  I truly believe he was just trying to assist people that struggled to climb up bleacher seats to another seat.  But, to ask us to move out of seats we are legally entitled to sit in bothers me.  I understand it is difficult to climb bleachers even when you are young and spry.  Heck, I’m in my thirties and I am not comfortable weaving through others on heights to sit in a seat.

But the biggest issue I had was being asked to leave.  I could not tell you what any of the other people sitting in those seats looked like.  Whether their disability was obvious (crutches?  Cast? Wheelchair?) or whether it was invisible.  The simple fact is IT DOES NOT MATTER.  It is not my job or your job or his job to determine who is disabled.

There was no reason for us to be shifted over to make room for other people.  One woman sat in that seat.  When my daughter wanted the comfort of her stroller I was no longer next to her and had to lean around to make sure she was safe.

I don’t know how she felt from this incident.  I know after this, after she fell off the playground equipment when she was scared by other children yelling, after when I tried to sit in a seat next to her stroller in an aisle seat at another performance and was told it was saved for someone else-I was done.  And to me it looked like she was as well.

So she and I returned to the tiger’s performance area.  The giant kitties didn’t need to perform now.  So five hundred pound cats sprawled in front of fans and napped.  We watched one pacing.  We watched one climb on another one and lick her gently.  And my girl was calm and just enjoyed their peacefulness too.

And I cried.  Because some days instead of bearing my fangs and growling menacingly I would rather just relax with my family and just be.  As a mama tiger to my own I will be fierce and fight battles when I need to, but sometimes I just don’t want to.  I just want to live life watching big kitties sleep in the quiet, hug my daughter and just enjoy the sunshine.  Just be.

So let me be.  And don’t judge a book by its cover.  Or a girl by her disability.  Or a lack of a disability.  Because, sir, next time you ask me to move you might get my Mama Tiger fierceness.


Living the Dream

19 Sep

A few years back I remember being mid-shuttle. I don’t remember which trip through town it was, but it was in the middle of the day as I drove past the park.  I’d survived the morning school run (kid one to bus-stop on time.  Get kids 2 and 3 changed, packed and in car to bring kid 3 to the daycare across town to shuttle back and bring kid 2 to the school when her elementary special education staff was there so she could be supervised and then go back to the other side of town to get to work.) And then started my shuffle to my traveling job and the morning’s shuttling in reverse and then dinner.

I was exhausted.  All the time.  I cared for others all day long.  I’d get up with my toddler who had just started sleeping alone after a few really long years of me cosleeping by her in order to keep her calm,  and assisting my son with blood sugar checks in the middle of the night.  Not to mention housework, cooking, trying to schedule appointments and keep a job,  

That particular day I was stuffing a sandwich in my mouth as I had to run to a school and probably drop off diapers or insulin and that took my lunch break and I stopped at a red light.  On this gorgeous fall day I watched a woman jogging.  I was struck with so much jealousy over this simple fact that she had the freedom to just go for a jog in the middle of the day.  She had her headphones on and looked so peaceful as she maintained her pace.

I nearly cried over that jealousy.  I was nowhere near running stage thanks to the extra pounds stress eating and focusing on others had given me.  I was still trying.  I was trying to work out- that was walking as the pressure on my knees was way too high.  I had to schedule workouts with a sitter to watch my younger two or somehow fit my special needs daughter or my toddler in a stroller (usually that was both and nothing could hold both of them anymore as double strollers aren’t made for children over the age of three).  And don’t forget my sweet, but anxiety ridden dog who doesn’t have walking manners.

I watched this woman, casually running and listening to her headphones and wished for a bit of that time.  Just one hour.  One hour for me in silence without needing to worry about anyone else.

Wishing didn’t make it come true.  But it was a turning point for me.  I knew because I wishing that hard on something fairly simple; I needed a change.

It has taken those few years but now I’m running.  My three kids are all at school.  I’m blessed to have a flexible schedule and be able to stay at home as my husband’s job changed.  I lost over forty pounds on my own so my knees no longer hurt when I run my interval jogging.  I’m not where I need to be physically, but I’m running.  And eating well.  And feeling great.  And I am fulfilling that dream.  I have the ability to lace up my Nikes and harness my dog and just go.

Sometimes they’re delayed.  Sometimes they need work to get there.  But dreams can come true.  Maybe not in the way you expect (I didn’t expect my husband’s job to go “poof” or for him to get a job in a different city and our whole family to relocate).  But my dream was modified.  I still shuffle kids.  That morning routine go get out the door to school is still not fun, but then I get time.  To clean, to write, to run. To just be.  I get to throw on my headphones and ignore anyone else’s needs other than practicing my breathing and fine tuning my gait.

I’m living my own dream.  And I don’t want to let it go.